[RobEParticipant]

Hi,

My mum was diagnosed 2 years ago, relapsed last year and we have been trying different drugs, the last being Bendomustine.

But none have kept the slow steady rise of her PP at bay. She is now always tired, she has blood transfusions every few weeks, and moving about at all is a great hardship. So she came off the Bendomustine three weeks ago and they put her on a small steroid dose, the news just in that her PP count has jumped up.

So now my father is faced with a difficult choice, does he see if she'll go back on the original drug, with which came some awful side effects – bearing in mind she is very weak – or is this how it ends? Is there a point where the drugs will make her more uncomfortable and reduce her quality of life even more, that it becomes almost cruel to try them?

Ultimately it is up to mum, but we don't feel like there are many options left, if any.

Hard times.

Thank you for taking the time to read this.

R

[eveParticipant]

Hi Rob

I was going to say a warm welcome to the site,but running out of options,is not welcome

You do need some of the more experienced people to tell you if there are any more option s or Ring the myeloma nurse she might be able to help.

You do not say what age your mum is and I do think it might have some bearing on her position and how she feels, in some cases on here the family have been told the situation and have not wanted the patient to be told,I suppose it depends on how good her consultant is,if you ask him direct,he must tell you the truth.do you want to know??? .i do know of someone who tried to keep it from her mother only for her mother asked to go to a hospic were they do a marvels job of careing in the last stages of life with respite instead of still being treated in hospital. May be its time for you to speak to a Mac Millan nurse.

Lots of things to think about I hope someone on here can give you advice about more treatment.Eve

[RobEParticipant]

Hi Eve

my mum is in her 70s…my Dad has spoken to the MacMillan nurse and they're going to chat after my mum's next PP result on monday, but it seems that we are going to try one cycle of the cyclophosphamide – the original drug that got her proteins down after the initial diagnosis, but with the awful side effects. At least she can stay at home whilst that goes on…

We will see,

Many thanks for your reply,

Rob

[eveParticipant]

Hi Rob

My husband is 69 years young this year has had Myeloma for 2 1/2 years CDT did nothing Velcade got him in a position for SCT he has had only 6. Months remission,but he is ready for the next treatment which we think will be Revidimide .he is in a good frame of mind which helps.

My husband has looked very ill at times weighing 60 k skin and bones also visit to ITU ,so try not to judge on mums tiredness plus you mum might react better to original treatment this time round as her system has got use to it.
It is very hard to watch someone you love having treatment and often complications,I have a tea shirt to prove it.

I think you need to know how aggressive is your mums Myeloma,has she had all the treatments available?????
Plus sometimes there are added complications,eg excessive damage to bones or kidneys,you do not say what her PP are and anaemia is commen with this disease ,that would explain why she is so tired.
I can honestly say last year my husband looked awful,he looks great now but he still has myeloma and we are back on the round about,so try to be positive .Eve

[DaiCroParticipant]

Hi Rob,

I am currently on Bendamustine… I have had CDT, a SCT, Velcade and Revlimid. There have been times during those treatments where I felt as strong as a new born babe and I couldn't imagine ever feeling anything near 'normal' ever again… but then I turned a corner and within days I felt really good and the feelings of absolute fatigue and weariness from just a few days before were hard to imagine.:-D

There is still a chance for your Mum to turn her corner and reach a point of feeling reasonably good and pain free. The likelihood of her feeling on top of the world is very slim but I imagine that all she wants is to feel something like and in a position to be able to move about and talk to her loved ones without the weight of her world pinning her down. That should be a possibility if the medics can find the right treatment at the appropriate levels of dosage.8-)

I wish her well and you and your family the strength to help her bear her treatment and its success.:-)

Dai.

[VickiParticipant]

Hi rob,

It's a long hard road, for your mum and the family, but don't give up…..search for every option as long as your mum is willing to go for it! Where there is life there is always hope. 🙂

Vicki and Colin x

[ozzyParticipant]

Hiya Eve
Dont know how to private email you so answered question by here. I don't know if I am on any trials but treatment was Velcade and Dex. They hit the pps down from 49 to 5 but the pn is so bad this week they have stopped this treatment. My feet have suffered and I cant sleep with them tingling and aching. My consultant is contacting the Prof at Univ Hospital Cardiff to see if I'm readY for sct number 2. I had the 1st one Jan 2010 so it didn't last long so I am worried how long this one will last. I have had 4 lots antibiotics since Jan and my chest/lungs are still producing green gunk!!In the beg I had 2 velcade per week for 2 weeks and then 1 week off. On the second week my fingers were tingling and I had high temp and overnight stay in a& e so they did it 1 weekly after that. I hope Slim can tollerate it better than me cos it seems to work well. Sorry I didn't see the email earlier.
Good heath
Ozzy

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